Hi,
A couple of weeks ago we found out that my partner (31) has AML, we had 2 weeks of testing to get our head around the situation and I thought we were pretty well prepared for what was about to happen.
A week today I took him into hospital to start his chemo, he seemed to be doing really well, albeit tired and fed up but ultimately wasn't as down as I expected. 2 days ago, they started suspecting that he may have an infection, and this seems to have been confirmed today, I’m really worried as I am only getting secondhand information through him and even he doesn’t fully understand what’s going on. I didn’t think he would get an infection this soon into his treatment as surely after 7 days his immune system isn’t yet at its weakest?
After all my research I’ve realised what everyone here probably already knows, I was not prepared for any of this at all!! My imagination runs wild when I’m not hearing back from him, I don’t want to wake him up if he’s finally getting some sleep and I don’t want to call the ward for updates as they are busy and I’m sure they can do without me calling every time I’m having wobble. After spending the last 18 months together 24/7 due to the pandemic being away from each other seems even harder.
My friends and family are great at making sure I know they are there for whatever we need but they don’t really understand what I’m going through as offer up the usual supportive lines about staying positive, but I feel like none of them really get it and I can’t talk about how I’m actually feeling without upsetting them. It would be great to connect with people who actually know how I feel.
Thanks so much
Oh also, he mentioned that his hips are hurting due to lying in bed so much, does anyone have any recommendations of anything I could get him to help with that?
Hi Nightlite54 and welcome to this corner of the Community but sorry that you had to find us. I am especially sorry to hear about your parents AML diagnosis.
I am Mike Thehighlander and I help out around our blood cancer groups. Although I was diagnosed back in 1999 with a rare incurable skin Non Hodgkin’s Lymphoma so have experienced a lot of the treatments used in this journey.
When a blood cancer like AML appears in the family it can often be sudden and treatments start quick.... so the space between your ears turns into a whirlwind.
infection ms are the unwelcome partner on this journey, even before treatment started his immune system was struggling as it was putting its focus on fighting the AML and infections can just sneak in..... you are going to have to get used to this as it happens a lot but good hygiene and assessing infection risk that he comes in contact with will become part of life - don’t get paranoid about it, you will get into a rhythm.
Hip and back pain...... Muscle wastage is a major factor as is fatigue. During the early days of my main treatment (hit my name for the full story) I asked my nurse for her top tips..... “Keep some simple activity going Mike, don’t lay in your bed all the time, when you can walk around your room, do some stretching experiences as this is the best way to over come some of the fatigue and the muscle wastage”
During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.
I also got them to take in an exercise bicycle and I sat on there working my legs.
Other things she said “...... eat as much as you can - even Hospital food as your body needs the fuel to function and drink at least 2 litres of water a day every day as this is the main thing you can do to flush out the toxins released by the chemo and protects your kidneys”
Let’s see if any of the AML folks are looking in but we are always around (along with my long suffering wife Fiona) to help as much as we can ((hugs))
